Tuesday, April 12, 2016
We all live and move within circles. We have our circle of family. We have circles of friends and of co-workers. And we have circles for special interests and special needs. Our circles are made up of kindred spirits. We trust the members inside. They are our safety net when we are vulnerable. But the reality is that our circles are constantly evolving. People move in and out of our circles depending on the situations in our lives.
When Emily was born, my circle of friends changed. I struggled with the grief that came with having a child with a disability. I had lost my own identity, the mom I used to be before Emily’s birth. I had lost the child I dreamed that Emily would be. I focused on becoming the mom my family needed me to be. I was abruptly thrown into a circle with other parents who also had children with disabilities. Those people touched our lives with their words and examples. They dispelled my feelings of aloneness. I took support from those in this circle who were there before me and later, I gave support to those who came after me.
The circles I knew before Emily was born, changed. Some people slowly drifted out because we no longer shared the same priorities. And others, I unknowingly pushed away when I put expectations on them. Those expectations put undue pressure on my friends and set me up for self-initiating disappointment. Eventually I learned that just as I get to choose how, and with whom, I walk my journey, they get to choose how, and with whom, they walk their journey. If others choose to continue to walk with me, I am blessed. And if they choose another path, then I am blessed for the time they did walk with me.
My circles changed again when Emily died. I desperately did not want to lose the support within the parent’s circle. As I faced the challenges of finding a new normal, I clung to the familiarity of those relationships. But the focus of raising Emily had necessitated my being in the circle, and when that focus was gone, the need for the circle was gone. Gradually it became obvious that I no longer belonged there. For the other parents, I, minus Emily, was an all-too-real reminder of the fragility of life. For me, seeing the intact families was a painful reminder of all that I had lost. It was fully two years after Emily died that I finally sent a note to the Down Syndrome Association of St. Louis and asked them to take me off the mailing list for their monthly newsletter. That notes was the final event that severed my connection from the circle of parents of children with disabilities.
I became part of a different circle – one for parents whose children have died. Now grief was my daily focus, and it threatened to consume me. As my journey took me through the swamp of loss, I experienced many “secondary losses” which heaped grief upon grief. I felt like I would drown in it. I surrounded myself with people who had traveled this road before me. When I was lost, they gave me direction. When I was weak, I relied on their strength. When I was confused, I used their wisdom. When I despised myself, I soaked in their love. And in turn, I gave that support to those who came behind me.
It’s now been nine years since Emily died. Now my question is, “How long do I stay in this circle?” The circle where I expect to be sad every day, where I struggle to allow myself to feel joy, where I feel guilty when I am happy, where I disapprove of myself for wanting to move on, and where I never feel that I have done enough penance for my imagined failings as a mother. I have been tempted to succumb to the black holes of anger, despair, and self-loathing, but now I am ready to step out of that circle. I am not looking to forget Emily, or to forget the people who were so significant in our lives. Her presence was so very significant! It was hard and it was so wonderfully simple. It was great and it was awful.